Why NHS treats some diseases better than others

When you can’t eat with mouth ulcers

Cynically – I advise friends to have Diabetes – not cancer.

Why?

Last week my GP called me in for a review of my Diabetes (although it is almost impossible to get hold of him for a cancer-related problem).  He spent a long time going through my diabetes history – which was a total waste of time from my point of view, as I am under an excellent Consultant at King’s College Hospital, who had done all the current tests, and managed to reduce my medication – saying that thanks to the exercise I was taking (good side effect of cancer treatment) I may be able to come off this altogether!

WHY THE DIFFERENCE?  Because my doctor gets about 15 times as many QOFs for doing a diabetes review – than he does sorting out my cancer problem.  QOFs are some extra payments surgeries get for handling our cases!

However, I though I had avoided the dreaded Cancer Chemo mouth – until a new drug set this off . Ulcers made it painful to eat, and I searched desperately for something to relieve the pain.

I phoned the Marsden, but they could only recommend I take a mouthwash – which nearly took the roof off my mouth.  The most sensible advice I had came from the nurse team at Cancer Research UK.

Luckily in the meantime however, I had emailed Evolife.  Back zinged an email from them saying they were sending samples of Evomucy for me to try.  This arrived at 9 am the next morning by DHL, and the first time I used this mouthwash I could feel the ulcers closing up.

So read what Cancer Research UK says, but if you want practical help – trust the French!

As they say, “one of the nastiest side effects is an attack on the mucus areas of the mouth.  This often results in painful and unsightly mouth ulcers that make it difficult even to eat or drink (they can say that again!)

Evolife make two products – Evomucy Mouth Wash, which you use as a mouthwash for about 1 – 2 minutes;  and Evomucy spray – which they say is particularly refreshing. This comes in a small spray canister which is easy to carry around in your pocket or handbag, and they advise using this 3 to 6 times a day.

Ask your hospital or nurse if they know about this – I know St. Mary’s Paddington knows about this, and other hospitals are gradually following.  Or contact www.feelbetterduringchemo.com

The Cancer Research UK Nurse’s reply was:

It would be helpful if you contact your original hospital team, or else your GP to ask them about your mouth ulcer problem. A doctor should have a look in your mouth to confirm the ulcers and check for any signs of infection such as oral thrush.

They can then prescribe medications to help speed up the healing of the mouth ulcers and prevent further episodes. Usually, certain mouthwashes, and if needed antifungal drops or lozenges are prescribed. There are mouth gels and mouthwashes such as Difflam which contain small amounts of local anaesthetic agents that will help reduce the pain and soreness. Painkillers such as paracetamol may also be suggested to help as well.

We have a section on mouth care on our CancerHelp UK website, and the link is here,

http://www.cancerhelp.org.uk/help/default.asp?page=11036#infect

If you would prefer to speak to one of the nurses directly, you can telephone us on 0808 800 4040.  We are here from Monday to Friday, 9am-5pm.

But the French attitude was so much more helpful.  I was known to them, so obviously they could send me a product without seeing me first.

To get information from the Marsden I had phoned them at 9 am – and they didn’t call back until 5.30 – and then gave me erroneous advice.

And as we all know, Doctors only get 6 QOFs for looking after cancer survivors, so we are low on their list of priorities – unless we are very lucky.  Mouth ulcers sound very low on priorities, unless you happen to be suffering from them!

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